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cholangiocarcinoma

leighkelley
Posts: 1
Joined: Apr 2006

Has anyone heard of clinical trials using egf-r therapy for bile duct cancer? I was told there has been some success with this treatment.

AuthorUnknown
Posts: 1563
Joined: May 2006

Hello,

You may want to contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day and can assist you with your questions. They can be reached at 1-800-227-2345 or by clicking on the "Contact ACS" link at the top of this page.

Take care and be well,

Dana
CSN Dana

mickeyk
Posts: 5
Joined: Sep 2006

HI, I AM BRAND NEW TO THIS WEBSITE AND TRIED TO GET INTO THE CHAT ROOM, NO ONE IN THERE, AND I CAME ACROSS YOUR MESSAGE. I BELIEVE THIS IS WHAT MY FATHER HAS. I KNOW IT AS BILE DUCT CANCER. HE WAS DIAGNOSED A COUPLE WEEKS AGO. IT IS NON-OPERATABLE, AND CHEMO NOR RADIATION WILL HELP. I WOULD REALLY LIKE TO COMMUNICATE WITH SOMEONE ABOUT THIS. HOW DO I GET STARTED? THANK YOU MICKEYK

evan14's picture
evan14
Posts: 2
Joined: Jun 2006

Hello Mike, My wife Dawn is a Cholangiocarcinoma patient - she had a liver resection in January 2006. Where are you at with your father? Is is cancer operable, or what treatment has been started? Have you visited ant of the other Bile duct cancer discussion groups on the web?

pjc3618
Posts: 5
Joined: Nov 2006

where else on the web can one find such discussion groups?

egale
Posts: 2
Joined: Nov 2006

Hi Mikey. My mother was diagnosed with inoperable bile duct cancer in August. By this stage it was quite advanced in the ducts within the liver. After reviewing various clinical trials and treatments, we pushed for off-label prescription of Nexavar (Onyx and Bayer) which has already been approved for Renal cancer. Nexavar is currently being trialed for other indications, including bile duct cancer. For the renal indication, it added to life expectancy, but is by no means a cure. She's been on it a week, and so far limited side effects (mostly digestive). She has her first appt on Nov 15th to check her out for any problems. The other main option I've came across is Avastin (Genentech), which like Nexavar was approved for other indications but is being trialed for use against Bile Duct Cancer. Downside is that it is very expensive ($10,000 pm). From what I've read, there have been encouraging outcomes when used in combo with other drugs.

pjc3618
Posts: 5
Joined: Nov 2006

so how is your mother doing now?

pjc3618
Posts: 5
Joined: Nov 2006

I should introduce myself before I jump in. I'm Pat and I also have this rare cancer. It was found early enough to do a liver resection and removal of affected bile duct and gall bladder.I was first diagnosed in sep. 05' and so far I am doing well. I hope all of you, Leigh, Mickey, Evan, and Egale, and your loved ones are doing well as it has been a while since your posts.My best wishes to you all, let me know if you have any questions regarding my case. Pat

evan14's picture
evan14
Posts: 2
Joined: Jun 2006

Hello Pat, I'm happy to hear you are doing well. Dawn is almost 16 months after resection and is still doing well. CT and PET scans were clear in Dec 06. She has not had any adjuvant chemo or radiation treatments.

Wearefighters
Posts: 3
Joined: Dec 2007

Hi, I am new to this board. We just found out last night that my husband has this type of cancer. We were expecting some time of liver cancer or pancreatic cancer because he also has a mass on the tail of his pancreas. We don't know anything about this cancer other than what I have read on the internet. From what I know it's a tough cancer to treat and battle we will. Any insight to help us get some ideas of treatment and success would be greatly appreciate. We see the oncologist on the 26th.

AZTom
Posts: 2
Joined: Jan 2008

Hi- Yeah unfortunately I'm very familiar with this cancer. Sixteen months ago I was diagnosed with stage lll cholangiocarcinoma, They operated, radiated and gave me chemo. No recurrences in sixteen months. Been working(sell real estate)or at least try to,(mkt sucks) for 14 months and feeling great. It took me a long time to realize that you can't really listen to any time frames on your life, two doctors told me I was screwed and the third one told me he would treat me. I'm 52 yrs old with a wife and two boys 12 and 13. Check out Novalis radiation, xeloda chemo combo if your Dr thinks that may help, my oncologist used that on me. Don't takje no for an answer from any of these Drs., you are in control. Also I bought this herbal tea(I thought it was bs but it supposedly purifies the blood and shrinks the tumors) is called Essiac tea,some old Indian formula which I bought when my mom got stage llll lung cancer(her tumors disappeared) two yrs ago, (shes currently cancer-free, I also take it myself)Hopefully it will help your husband. By the way I don't sell the stuff, I just use it along with many of my cancer buddies out there. Also another thing you'll not want to do is read any of that crap on the internet about cc, all it will do is scare you and most of it is outdated. Let me know if you need anything else, good luck to your husband, this will pass and I know he will kick it in it's ass. Tom

MicheleAshley
Posts: 1
Joined: Apr 2010

Hello Tom, I know its been a long time since your 2008 post, but wondered, how did the radiation affect you. My girl friend who was recently diagnosed with Cholangiocarcinoma and just finished her radiation/chemo treatment and is in constant pain. How did you cope with the side effects.

I so agree with you, re: information on the net which is very scary, and one should not listening to a doctors who paint a doom and gloom picture but trust your faith and have a positive disposition! Which is what my girlfriend has. She is such a positive inspiration for me, I admire her each day.

Also, did Essiac Tea work for you?

seli
Posts: 5
Joined: Jan 2011

Hi I'm clueless. All I have is faith & hope and even that the doctors are trying to take it from me. My mother has removed her gallbladder about 2 months ago & it was then there discovered that she has a stage 3 gallbladder cancer. Unfortunately, she was visiting in Ethiopia when she was diagnose & she was very week to travel. She finally made safe here to U.S. about a week ago. We took her to University hospital of Cincinnati right away, & was there for the a week. Now she is home with us. The doctors told us that the type of her cancer is Cholangiocarcinoma cancer. she had CT scan & they're saying the cancer is showing on & around her small intestine which is preventing her from eating much, as well as on her blood vessel on & near the her liver. The doctors told us that there is nothing they can do for her beside to put her on chemo for whatever time that she has left. They're giving us few months. I've searched, & read lots of amazing survivors stories and found out that for this kind of case it is usually recommended to have a surgery called Whipple surgery which a very risky surgery. On mom's case, the drs. are saying they won't be able to do that for her 'cause the cancer is showing on her blood vessel & they're claiming, it's impossible.

They already made their mind about her life. They believe she doesn't have any hope. I don't believe that. I want to hold on to my hope & faith 'cause that's more powerful & helpful. I also believe in miracle but I can't sit & just wait for miracle to happen. I have to search for it; therefore, I'm asking for anyone to help me out with any information. My mother is also a type II diabetic. As it is because the cancer is on her intestine, she's having hard time eating. she eats very little & the doctors like i said they're not being helpful. I would like to know from anyone who is type II diabetic or who knows someone with type II diabetic who was diagnose with this deadly cancer, what we would be good to feed her. She is now in Cincinnati OH & will start her chemo by the end of next week. we will kindly appreciate it if anyone can share with me any info, Did you have same problem? Where did you go to? What kind of chemo cocktail were you on? How soon did you see the result? Where you able to have the surgery after wards or even before the chemo? Who was your surgeon? Did you have to have radiation to? Please help me help my mom.

Thanks!!

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

I'm not finding much info here on Bile Duct Cancer but I've started researching and have found stuff elsewhere that may be helpful.

Mayo Clinic recommends radiation in conjunction with chemo and then surgery to remove tumors or replace liver if possible for best outcomes. Mayo and others also have clinical trials going for new therapies.

http://www.cholangiocarcinoma.org/punbb/ support forums look lively but I've only looked tonight for a few minutes.

Research articles:
http://www.ncbi.nlm.nih.gov/pubmed?term=%22bile%20duct%20neoplasm%22[all%20fields]%20OR%20%22bile%20duct%20cancer%22[all%20fields]%20OR%20%22cholangiocarcinoma%22[mesh]%20AND%20%2855901[AD]%20OR%2032224[AD]%20OR%2085054[AD]%20OR%2085259[AD]%20OR%20Mayo%20Clinic[AD]%20OR%20Mayo%20Foundation[AD]%20OR%20Mayo%20College[AD]%20OR%20Mayo%20Medical[AD]%20OR%20Mayo%20School[AD]%29&cmd=DetailsSearch

Trials:
http://www.cholangiocarcinoma.org/clinicaltrials.htm
http://www.mayoclinic.org/bile-duct-cancer/

Hope this helps...I'll be back to this post with more info/insights.
Be well,
Janine

ericamyers31's picture
ericamyers31
Posts: 11
Joined: Mar 2011

Hi,

My mom was just diagnosed with Bile Duct Cancer/ Cholangiocarcinoma cancer; and as u stated this seems to be a very deadly cancer... Nevertheless, like you I am NOT setting around to see what the doctors will or will not due for my mother. I think u and I can share in our experience, support one another, and beat this cancer... My mom is starting Radiation & Chemo on 4-4-2011 she will do 5 weeks and then off for 3 weeks and back again for 5-weeks. I am at my wits end I am so angry, upset and are not willing to give up on my mom. In addition, it seems you are also willing to do everything it takes to fight for your mom. I want my mom to get a second opinion but my mom really likes & trusts her doctors whom have given us hope, and say it can be beat cause once the radiation & chemo is done they plan to do surgery. I look forward to hearing from you. Also have you checked into Mayo Clinic’s who what I read specialize in this cancer; alternatively, the Cancer Center of America. Please contact me.

sbwmn
Posts: 1
Joined: Apr 2011

Hi,This is the first time I'm posting on this site and read so many stories. My mom was recently diagnosed in february with stage 4 bile duct cancer with mets to the liver and was given one year to live with chemotherapy treatment. she is currently on treatment she gets gemzar and cisplatin once a week for 2 weeks then off 1 week. She is very weak and has lost over 60 pounds and continues to lose weight. She eats and drinks very little and the chemo makes her very nauseas. We did get a second opinion at the Mayo clinic in Rochester Mn and they told us that this is the recommended treatment for my mom. If anyone can give me any hope or helpful advise please contact me 1-320-632-5634-Shelly-

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

My husband has been diagnosed with stage 4 bile duct cancer, too. The same treatment of Cisplatin/Gemzar is what has been planned for him. There are other drugs to choose from, but this is the one that most oncologists are using, especially on Medicare patients. Avastatin and Nexavar are two I asked him about because they are new and have shown promise. He subtly suggested that they were very expensive and not yet approved by Medicare for use on Advanced Bile Duct patients. I hate the thought that there ARE other treatments out there that will not be offered to my husband, because the wheels of progress in Medicare are slow to change and we can't afford these expensive drugs. While my husband's cancer won't wait. I am not that hopeful for regression of the tumors, because the evidence shows that cholyangiocarcenomas are not responsive to any kind of chemotherapy. But, he is healthy otherwise and shows no signs of the disease except for the scans, (I mean he is not outwardly sick). No jaundice, good blood work, no weight loss and good appetite. I'm actually scared to death that the chemo will knock him for a loop, and cause the problems that I read about. I have searched for a second opinion from the Allegheny General Hospital. They have a multidisciplanary Liver Cancer team dedicated soley to the treatment of liver cancer. I have not yet heard back from them. If they say the same thing as your second opinion, I believe it will be because he is a Medicare patient and no other course will be approved.

Tammy1947
Posts: 1
Joined: Aug 2011

Hi all
I guess you could say we my mom and i have been fighting this bile duct cancer sence feb this year. she was having gallbladder trouble and went to have a ultra sound to see about removing it, where we learned her liver looked strange and the doctor was sure it was cancer and a biospy was done to see if it was cancer or not. The results said no cancer doctor said she just had a fatty liver as she is over weight and is a diabetic, so they removed the gallbladder and of course everything that is removed is tested for cancer and the gallbladder was cancer free. This was March 1. Mom just never got to felling better and started losing weight, ended up at hospital one night thinking she was having a heart attack they did blood work no ekg no ct yelled at her for not going to see her doctor I was pissed. Mom called doctor next day and he sends her to a liver specialist who does a lot of biospies. Then we spend a month trying to get a pet scan(insurance dragging feet) now we are told my Mom has intraheptic bile duct cancer that is in some of the lymph nodes around the liver, oh in the left lobe of the liver and is to large to do surgery on.
"As everything else has been ruled out, it most be bile duct cancer. No cure, treatable but no cure. Well its only curable with a liver transplant but you are not a canidate for a liver transplant because your a diabetic and you were cured of utrine cancer 27 years ago with no reaccuance. but your still not a canidate...."
Mom had her first chemo yesterday tolerated well...I have asked beg mom for a second opinion she has finally agreed to have one just to see...
So this is my story of how I come to be here....We will see where we go from here. I may need help not sure what to ask for....but I will tell you this.....WE ARE NOT GOING DOWN WITH OUT A FIGHT AND WE ARE NOT GOING TO GO QUITELY...(tears and breathing)....
Back and forth and back and forth(you do you dont you do have cancer)for 4 months now you do oh and its not curable....That's not good enough.
Mom's cocktail is Cisplatin and Gemzar
Tammy

ericamyers31's picture
ericamyers31
Posts: 11
Joined: Mar 2011

hi,

i seen the post and would love to know how your dads treament went and what he has had done. my mom has this type of cancer and i am sooo desprate to talk to anyone who has been affected by this cancer.. please reply to me anyone..

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